Michelle's Heart Valve Journal

Joined August 22, 2017

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My Story

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    I am from: Saugus, Ma
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    My surgery date is: October 30, 2017
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    I was diagnosed with: Mitral Regurgitation
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    My surgery was: Mitral Valve Replacement
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    My surgeon is: Dr. Hassan Rastegar
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    My hospital is: Tufts Medical Center Boston, Ma

In my own words:

To think i was only diagnosed in jan 2017 (BY ACCIDENT) and here I am only nine months later preparing for OHS for a mitral valve replacement in only 13 days, Oct 30th 2017 I still haven't quite had enough time to process this whole ordeal, in the sense i really thought i had years before surgery, and so did my cardiologist also. So I can't fully wrap my brain around that this is REALLY happening...so soon!
This is how it all began....
I was sick with some kind of common virus, which I went to my primary Care Dr for, when she listened to my heart she said "wow, you have a very large heart mumer, no one's ever told you that?!" The look on her face was almost as shocking as mine, I replied "well since you've been my Dr for 19 years and YOU never mentioned it, NO no ones ever told me!" I really thought nothing of it, i assumed because I was so sick at time, maybe it pronounced the mumer louder than it really was. She said to be safe lets just see cardiologist, fine i said. Went following week, met with cardiologist, he checked me and said yes i do here it but Probably nothing, lets schedule ECHO just to be "safe". I really left that office thinking i'll never see him again after for results because everything was going to be just fine, so i thought!..That ECHO, well, essentially getting sick with that virus at my PCP Office SAVED MY LIFE!! I got a CALL on my phone, ill never forget i was in a store shopping, and they gave me the results over the phone, they werent good! Nurse said my ECHO showed I have a massive leak in mitral valve with severe Regurgitation!! 1ST off, why in the hell would they think its o.k to tell someone this over the phone, its NOT, i remember being by myself, bawling on phone, walking around in circles for an hr straight on phone calling everyone close to me 2nd I had no idea what this meant, i instantly felt like a ticking time bomb, i couldn't Evan sit with myself without getting major anxiety. Looking back i think i was running in circles trying to get away from myself, lol! I was sick in total disbelief, one minute your perfectly healthy(so You think) and within seconds of hearing news your whole world changes! Btw, my husband was out of town for this phonecall which was the 1st time in 13 yrs he has left my side. THANK GOD for my amazing family/support system. After this news, my mom took me very next day to Cardiologist App for plan, he said he was going to start me on Lisiniprol med, and monitor me every 3 months with ECHO'S if there are no changes , we will continue another 3 months and so on. Basically, buying time, he said because im so young they wouldn't want to operate too early???! That still doesn't make sense to me? I was diagnosed right from very begining with SEVERE Regurg, so what are we gonna wait till heart failure?! Wouldn't they want to operate on a stronger heart instead of waiting till the heart gets any weaker, he did say at that point my top chamber was already enlarged. Isnt it better to be Pro-active instead of re-active??! Anyway, he assured me i wasn't going to drop dead, and would see me back in April. Well i ended up going back a month earlier in March instead because of symptoms i was having. (Now, your probably wondering did i have ANY symptoms at all before i got diagnosed, yes, i did BUT i chalked them up to major anxiety i THOUGHT i was experiencing for yrs, frequent palpitations, shortness of breathe, dizziness, never in a million yrs did i think i had anything wrong with my heart!)
In march, i would get these episodes were its almost like the wind would get knocked out of me for a second, it was a crazy feeling. So we did ECHO earlier in March, no change, great news! Now, in my head I'm like "oh this is great, it will be yrs before i have any changes and need any kind of surgery" ya wishful thinking, fast forward to June, my next 3 month ECHO, now the month leading up to this one, my shortness of breath got BAD, i am someone who is very active my whole life, sports, working out 4-5 times a wk, all that stopped in Jan, but at this point in June, i literally couldn't pick up my daughter and hold her for more than 2 seconds without getting winded, it was quite sad actually. It was getting worse and fast! So June results really didn't come as a shock.... there was change from March, my pulmanary arteries were being affected, and my lung pressures increased drastically. He said it was time to see a valve specialist Boston. Now i asked Cardiologist if its time for surgery do you think it can be repaired, he said YES and also told me "down the rode when you eventually need a replacement we'll do tissue we like to stay away from mechanical( huh, remember these words!) I met with specialist who by the way was incredible, gave us more info in 2 visits than what my cardiologist did in 6 months, after more numerous test in Boston, after getting "beautiful" pics of my valve, he told me he was "100% positive i had Rhuematic Heart Disease due to untreated step throat, that this has been going on for decades and my valve is so far gone, its def going to be a replacement, can't be repaired, its severe, this is the real deal,and its time for surgery." this was all in July, He set me up with Sugeon who he highly recomended, as well as my cardiologist. I met with him in August. Let me tell you the verdict is still out whether I "like" this guy or not. NO bed side manors at all, no caring or compassion all business BUT ive done my homework on him and spoke to other patients, he IS THE BEST at what he does. And ive come to realize, im not looking for a boyfriend, im looking for the very best heart surgeon to trust with my life, so i think i can overlook the fact that he's not all warm in fuzzy. As long as be saves my life and brings me out alive and well he doesn't Evan have to talk to me at this point. Trust me, this approach may not be for everyone took me all long time to except him and come to terms with his personality. But like I said EVERY single co-worker of his and patients said they would trust him over anyone else in country to do this surgery, that's good enough for me... So in meeting with him, he said that it def was time for surgery, but i finagled my way to post-pone till after my little baby brothers wedding Sept 30th, myself, my husband, son and daughter were all in wedding party, couldn't miss it😉 we planned for Oct 30th for big day, but here's another dilemma i had exiting his office, he told me we would be going with a Mechanical Valve becasuse im so young. He said it would last be a life time, he knew i wasn't happy, after i started crying and i was caught completely off guard after thinking this whole time i was getting a tissue valve per cardiologist?! He said tissue, he would be back in after 10 yrs doing it again, and possibly a 3rd time. Of coarse, i want to do this only 1 time but i wasn't mentally prepared for a whole new way of life of blood thinners and checking blood frequently, i guess in the scheme of things, its as small price to pay to live right? I also just felt the cardiologist never was on same page with my specialist and surgeon, this whole time i was thinking i was eligible for as repair, nope, has to be replaced, i also was under impression tissue valve, nope, def going with mechanical... its fustrating being told one thing, preparing for that one thing and then being told another, ugggh!! Im sure this has happend to quite a few of you!! :( when I left that After meeting with surgeon and surgery date was set, i was a mess in my head for literally over a wk, i couldn't sleep with so many questions and doubts. Honestly for the 1st tinge in my life I had no idea how I felt, litetally no clue, Do I do it, dfo I not, Do i like him do i not?blood thinners or not, get yet another opinion or not? can i EVAN really go through with this now that it's planned or not? Am I strong enough or not? Still to this day same questions but i remember after my meeting with him I was more torn than ever!! 1st thing i did when I got home that night was order Adam's Book (Thank you Adam!!) Read it in 24 hrs😉 and also I may not post on here often but believe me when say I am on here every single night reading each and everyone of your inspiring stories, you all and this site have been my saving grace during this evoke journey, so thank you all for sharing!!!!!! Let's be honest, this surely is one of those experiences in life, unlessyour going through it or a already been though it you can't understand fully. Also, as great as a support system i have ALL around me, they love me and THEIR just as scared, i don't want to unload any more worry or fear on there shoulders! So i have 13 days to go, and ive never been more scared of anything in my life, at least 5 nights out the wk after i put my kids to bed, i go in my room ave cry begging god not to the me away from my kids! The thought of leasving them without a Mommy makes me physically ill, but all I can do at this point is have faith and give it to God, and trust that he has me! Like it or not this IS happening.

Sooo, i don't like asking for anything, but i feel you are all my "❤ Family" now, Im asking kindly for you all to get me in your Prayers as I Will continue to do for ALL of you!!!

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